Tuesday, 21 March 2017

Happy World Down Syndrome day.
It's been 20 months since we became a family of four.
20 months since we became parents of a special needs child.
20 months since our first born became the most caring, kind, protective, and proud big sister.
It's been the most hectic, exhausting, eventful, and wonderful 20 months beyond anything we could have ever imagined.

I like to think back on those first 2 weeks in the NICU, trying to remember all of the little details, and all of the (mostly negative) emotions.
Because if I could go back in time to tell that sad, disappointed, panicked self, just how amazing the next 20 months would be, I probably wouldn't have believed it.
Back then I scoured social media, looking at pictures and reading blogs of parents who have walked this path before us, and wrote about how their child with Down syndrome made a positive impact on their lives, and how they wouldn't change a thing.
Back then I was skeptical, because I thought my child had a "disability".
Why wouldn't I want to change that for her if I could?
Back then I was fearful, because what if months, even years pass and I could never feel as happy, or excited, or proud, as these parents do?

Well 2015-me, you had nothing to worry about because that little girl who was hooked up to all those machines in the NICU is doing extremely well.
In fact, she's basically human-Prozac and is spreading joy wherever she goes.
I don't regret those initial feelings of fear and disappointment though, because it also reminds me how far she's come, and how far we've come as a family.

I know I said this last year but today and everyday, I will shout your worth.
To anyone who will listen.
So that everyone understands just how amazing and worthy you, and the entire Down syndrome community are.
That your difference is not a "DISability", but just a different ability.
An amazing ability of positivity and perseverance that everyone can learn from.
Happy Down Syndrome day baby girl.
You are so special.
You are so worthy.
You are so loved.

And now because I slacked off for a whole 20 months, I have a year's worth of photos just accumulating on my computer.
So lemme just do a major photo dump, in the name of a recap of our 2016.

JANUARY
After rushing to the ER on Christmas Day 2015, and having our fear of infantile spasms confirmed on Boxing Day, we started a course of anti-seizure medication that made her very sedated and drowsy.
She spent the better half of this month sleeping and trying to get used to the meds.

Long story short, the initial medication that sedated her to the point of dehydration and a second hospitalization wasn't even effective against the seizures.
We had to move on to steroid injections, which came with a whole new slew of side effects...

FEBRUARY
The steroids proved to be effective and we gradually started seeing improvement.
My birthday was the first time in almost 2 months that we saw our girl smile again!

But with the injections also came those awful side effects, the acid reflux, the insomnia, the baby "roid-rage"... and the water retention.
Although it's harder to call the water retention "awful"...
I mean, look at those cheeks.

MARCH
The cheeks just seemed to keep getting bigger.
Not that I was complaining, although the sleep deprivation was something else.
Having to carry/hold a roid-raging, acid refluxing, insomniac baby 24/7 for 2+ months was no easy feat... (and I literally mean 24/7, since poor girl couldn't lie down thanks to pain caused by the acid reflux.)

We survived though! And seeing the light come back in her eyes was worth every sleepless night and exhausted day.
And then there's big sis. Who was so incredibly understanding and patient since Christmas Day when we had to leave her at home with her uncle so that we could go to the ER (and the subsequent weeks of hospitalization and doctor appointments).

The way these two love each other is everything I could have ever hoped for.

(I wasn't kidding about those cheeks)

APRIL
Because the steroid injections also took away her immunity and her body's ability to fight any infections, we basically stayed home for the rest of the winter.
It was so nice to finally get outside once the weather warmed up!

You're welcome for this ridiculously fluffy bunny.

MAY
Her water retention finally started to resolve, so I had to snap some shots of the chubb while it was still there...!

It was so good to get back into our normal routine.

JUNE
My sassy, witty, best-sister-ever of a big girl turned four!
We got a bouncy castle taller than our house, and threw a "pink&purple party".
As per the birthday girl's request.

JULY
And then the nugget turned ONE.
When I was pregnant, I thought to myself
"sorry second child, but I don't think you'll be getting a 1st birthday party like your sister"
but then after the year we had, how could we not celebrate?
And so we did.

Complete with a (kiddy) pool.

AUGUST
Mama got a MUCH needed break when we flew out west to see jiji and baba (my parents).

Enjoyed watering, just as much as she did GETTING "watered".

This one started getting more mobile, and with it of course came the injuries...

SEPTEMBER
We had a great summer, which definitely made up for our winter.
First trip to the zoo.

One started school, and the other started being able to use two hands simultaneously!

Exciting times all around.

OCTOBER
Our long awaited trip to Japan.
The initial plan for spring had to be postponed because of the seizure treatment, but it was worth waiting until everyone was healthy enough for travel!

And someone started crawling while we were in Japan!

NOVEMBER
This month was a jet-lagged blur and I slacked off on taking pictures.
Oops.

DECEMBER
We hadn't had the best of luck with our previous few Christmases.
(ice storm, power outage, sickness... more sickness...)
So we were determined to make this one great.
And it was!
Complete with gingerbread houses and matching pyjamas and playing in the snow.

The smiles on this girl's face alone made up for all of our past Christmases.

Someone hadn't quite grasped the concept of what was happening
but was excited anyway.

So there you go, our 2016.
The first few months were tough, but looking back
I'd say it was a great year.

If you're still reading this all the way at the end,
THANK YOU.
Either you really love us,
or you had a lot of time on your hands...
(but really, thank you)